What four things are carers telling us about health and social care?

Earlier this month was Carers Week, which recognises the contributions of unpaid carers and recognises the challenges they face.

The 2021 Census showed almost one in ten people in England aged five or over were providing some level of unpaid care. According to Carers UK, unpaid carers provide care worth £184.3 billion per year, and 52% of carers they surveyed in 2025 said the amount of time they spent caring had increased compared to the previous year.

Our latest insight looks at what carers are telling us about their experiences. The feedback we looked at revealed issues around:

• Knowing where to get help and support
• Navigating social care support
• Access to healthcare
• The broader impact of being an unpaid carer

What issues do carers have with knowing where to get help and support?

Being an unpaid carer can be isolating, and people may need peer and financial support. However, they often don’t know how to find support. Research by Healthwatch Lincolnshire, for instance, found that one of the biggest challenges for carers was not knowing what support was available:

“I feel alone. I have to make all decisions. I feel trapped and at 80 nearly 81 I feel I have no life left. I’m just a companion, cook, housekeeper, chauffeur, accountant, secretary, nurse, liaison officer. I would like to leave and just be responsible for myself.” — Story shared with Healthwatch Lincolnshire

Healthwatch North Yorkshire found that carers from ethnic minority communities were particularly likely not to know about sources of statutory support. They often rely on support within the community or support from faith groups.

“Some people don’t know they can claim support as unpaid carers. Even when they find out, they may feel worried about claiming it.” — Story shared with Healthwatch North Yorkshire

When found, it is encouraging that support from third sector organisations like charities can be valuable, especially peer support and advice on navigating support from adult social care:

“Everyone I've spoken to at Carers Matter Norfolk were very friendly, especially [name removed] who was brilliant with her help and advice. She explained everything clearly and answered my many questions. Great service.” — Story shared with Healthwatch Norfolk

What difficulties are there with navigating and getting social care support?

The Care Act 2014 gave unpaid adult carers the right to a local authority assessment of their support needs. If their needs meet national eligibility criteria, the local authority has a duty to provide support. They can do this either by directly supporting the carer or by providing help to the person they are caring for – respite care, for example.

From 2023/24 to 2024/25, there was a substantial increase in the number of unpaid carers who needed support, according to research by ADASS. Over two in five Directors of Adult Social Services in England (41%) saw an increase of more than 10%.

But generally carers found it difficult to navigate access to social care support, including a carer’s assessment. Research by Healthwatch Lincolnshire found that the assessment process was difficult and confusing, and involved long waiting times.

Carers wanted a better understanding of how their needs and those of the person they were caring for were assessed. They particularly wanted to know how the financial assessment process worked – carers were worried about how much they might need to contribute.

“Carers were discussing concerns about the cost of care for their partners. They explained that clear financial information isn't given at the start when care is organised by social services, and because a financial assessment then has to happen, they are left with uncertainty about what care will cost.” — Story shared with Healthwatch Hampshire

We also heard that when social services visited for a social care assessment of the person who needed the care, their carer wasn’t always asked if they also needed a carer’s assessment. 

“At no point as the primary carer did anyone from adult social services ask me if I needed a carer’s assessment despite this being part of the Care Act assessment. I only got listened to when I raised a complaint.” — Story shared with Healthwatch England

Although a carer’s assessment might lead to respite care access, allowing unpaid carers to have a break from caring, they didn’t always get it. We heard about the potential impact of council-owned respite care facilities closing and carers having to make a bigger financial contribution towards respite costs:

“There used to be a rolling respite service at respite rates. Now, the cost of respite is out of people[’s] ability to pay, putting sometimes unacceptable pressure on carers.” — Story shared with Healthwatch Redcar and Cleveland

Can carers get healthcare for themselves and the person they are caring for?

In 2014, NHS England set out 37 commitments to improve access to and experiences of care for unpaid carers. These include training healthcare staff to ensure they are aware of carers’ needs, and publishing examples of best practice in general practice. This means carers can ask GP practices to note on their record that they are an unpaid carer, so the practice can give appropriate advice.

However, the 2024 Darzi review found that unpaid carers don’t get the support they need from the NHS. This was a clear theme in the feedback we looked at. 

We heard that carers faced difficulties booking GP appointments when their practice insisted on them ringing or visiting the surgery at 8am to book one. This was a particular issue if carers needed to be awake during the night to care for their loved ones.

And using the NHS App to book an appointment for their loved one might not be possible either. Healthwatch Coventry found that carers find it difficult to access the NHS App on behalf of the person they care for because they couldn’t link their account with that of the cared-for person.

Carers told us that they weren’t always allowed to attend healthcare appointments or speak for the patient, even where the person they cared for had dementia or was unable to communicate with the healthcare professional. We also heard about healthcare services repeatedly trying to contact the patient rather than their carer, leading to missed appointments:

“Despite advising numerous times that my mother has dementia and that all contact should be via her nominated carer, the GP repeatedly telephones her to arrange appointments, resulting in missed appointments and wasted NHS time.” — Story shared with Healthwatch England

How does being an unpaid carer impact people’s lives?

Research by Carers UK shows that the impact of caring can have a substantial impact on all aspects of unpaid carers’ lives. This includes their finances, physical and mental health, ability to work and their personal relationships.

“As soon as I left work to care for my [loved one] I lost all my friends, and he doesn't want to go out. It drives me mad. All of my family work and don't live near me.” — Story shared with Healthwatch Medway

“[Name removed] has contacted the hospital referral line about musculoskeletal) therapy as his symptoms are getting worse and has been informed that the earliest available appointment is 2 March. He is extremely concerned, as his symptoms have been deteriorating. In addition, he is the full-time carer for his wife, who has dementia, and he is worried that his worsening physical health may impact his ability to continue providing the care she needs.” — Story shared by Healthwatch Bury

What could help support unpaid carers?

The experiences shared by unpaid carers paint a consistent picture of a system that often feels fragmented, difficult to navigate, and insufficiently responsive to their needs. While carers play a vital and increasingly significant role in sustaining health and social care, they continue to face barriers in accessing clear information, timely support and recognition from services.

When support works well, it can make a real difference, particularly when carers receive clear advice and help from trusted voluntary and community organisations. But without better identification, information and practical support, caring responsibilities can seriously affect people’s health, finances, work and relationships.